Need Advice on 6y son Please?

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I will give a bit of background info:

Daughter (13y): Math Learning Disability, Auditory Processing issues, Attention/concentration issues. Gifted, with IQ over 130.

Son (12y): Diagnosed Aspergers, with 10th percentile for pragmatic speech. Four years gross motor delay, diagnosis of GERD, sleep apnea, and dysgraphia. Gifted, with IQ over 130.

Son (10y): Diagnosed Anxiety Disorder, a tendency to be a bit OCD, video games are focus. Had severe speech delay and speech therapy since 3y, hit final speech therapy goals and is no longer getting services. Low-average pragmatics for speech, introvert, and a little socially awkward. Gifted, with IQ over 130.

Daughter (8y): Possible ADD, but otherwise no neuro issues at this time. No learning disabilities. Gifted, with IQ over 130.

Son (6y): Premature delivery at 30 weeks. Neonatal jaundice at just days old. Then breastmilk jaundice at 3 weeks. Spent 6 weeks in the NICU. Minor NEC resolved. At 10 months he was assessed by early intervention program. He was found to be at the level of a 2 month old. Until age 2 3/4 he saw 4 therapists a week, OT, PT, Speech, and Developmental. He was assessed earlier in the year for ASD but was told he was emotionally withdrawn. A few months later he was tested in pragmatics and scored a 5th percentile and given a diagnosis. Now they want to reassess for ASD.

He is in 1st grade, and has not picked up reading. All my others read prior to kindergarten, with NO prompting from me. For the last several years he has used the computer to play computer games. But has NEVER been able to RETAIN how to spell the sites he uses (i.e. NickJr, PBSkids) even after what I am sure is thousand times of repetition. He was given a FSIQ of 132, but the discrepancy between the VIQ (108) and the PIQ (140) is huge. He also scored low on Processing Speed (94). All of my boys scored extremely LOW on processing speed and working memory. I have been doing research trying to find out if there is ASD with high PIQ and low VIQ, but have found it is opposite in almost all cases (such as it is with my oldest son with Aspergers). He has definite symptoms of ASD, but presents differently than his older brother. I am lost.

The school keeps saying he is fine, but that is also what they said of my other kids when they all fell apart the further along they got in school. I want to be PROACTIVE this time. I was traumatized by what happened to my oldest son when he started middle school last year. Systematic bullying shattered him, and he had started to plan on suicide. Devastating to say the least.

The school pysch is being condescending and patronizing.

SO please any ideas???

It would help to know where you live, since different countries have different laws/systems, so how you would proceed would be different.

It sounds like you have a lot to deal with, and the school district is not one that you can rely on. You will need more assistance, but what kind of assistance, and from whom, will depend in large part on where you live and how the system works.

I can't really comment on the VIQ's v. the PIQ'S et al because that is exactly the type of information that has always flown in one ear and out the other with me. I can say that the existence of discrepancies seems common with AS, and that we've seen kids on this board that seem to be completely flipped on where the strengths v. weaknesses are, so I don't think that rules anything out. I also don't think the label is anywhere near as important as knowing where the strengths and weaknesses are, and it seems like you are solidly on track for figuring that out.

My son has no memory for spelling or anything resembling spelling, and was not able to learn to read using whole language (he is 100% a phonics kid), so some of your youngest son's early learning questions seem familiar to me. But my son is great reader now, well, above grade level, so it should all come together. Achieving reading fluency around 3rd grade is completely normal. It was a struggle for him, not so much because he had a deficit there, but because he was only interested in reading material that was miles beyond his ability, and he got bored / frustrated having to slog through the types of text he could read. Some kids just are like that.

Spelling is another topic, but we've got a work around there. We live the age of spell check and even though learning to write and edit was a slow road, he's there.

Schools are focused on fine, but we as parents of course want something better. Keep your eyes open for signs of frustration or shut down, and then get creative on helping him through those humps.

It is good that the school is willing to look at what the issues may be. Stay engaged with them, and remember that the goal is the right services and accommodations; labels are just the means to the end.

We are in Sacramento, California. We have been fighting with this school district for the last year to get help for all four kids who need it. They are seen at the UC Davis MIND Institute.

sounds similar to my 4 yr old:
FSIQ 122
VIQ 108
PIQ 129

no processing speed score because he cant use a pencil well enough to complete that portion of the testing. he gets OT for that. he also gets ST because of a "profound severity" rating for intelligibility, and the psych that did the IQ testing believes his speech issues may be artificially bringing his VIQ down.

as for his diagnosis, he currently has a medical diagnosis of asperger's from a local psychologist. that diagnosis is incorrect, he actually fits the criteria for classic autism. he is undergoing some more testing which starts tomorrow, this time with a neuropsychologist who specializes in pediatrics and can do more than the local psych; we are looking for more answers in regards to processing, sensory dysfunction, vestibular issues, etc. in school he has an educational diagnosis of autism spectrum disorder which is as specific as the school gets, but on the eligibility checklist they use, he received checks for enough criteria to fit the diagnostic criteria for classic autism.

i cant say hes the poster child for classic autism or anything, but he does have a similar pattern to his IQ scoring.

your school psych sounds familiar too, unfortunately we were told last year that our son was "too young to be diagnosed asperger's" and the school psych refused to diagnose him ASD at all, which meant no ASD services. the psych claimed that my son played with other children because my son, the extreme sensory seeking tactile child, walked his fingers up a girls arm. we asked for a reevaluation this year, and thankfully the new school psych saw my son clearly.

There's good news and bad news there. California is suffering so badly economically, that getting the supports that your children need can be a terrible struggle. On the other hand, the law is the law, and the laws in the US are fairly good (although not terribly well enforced).

The first thing is: have you gotten a decent evaluation done? It doesn't really matter if school says "he's fine." That's just an impression. The real issue is whether his evaluation is a good, thorough evaluation, that properly assesses his strengths and weaknesses. It should include a thorough OT assessment (for both fine motor and sensory issues, assuming both are of concern) and a speech and language assessment (for articulation, pragmatics, etc) as well as the educational/academic piece that is generally first thought of. When he transitioned from pre-school, there should have been an evaluation (assuming he was receiving services). If there wasn't an evaluation at that time, and there hasn't been one, you need to ask, in writing for an evaluation to be done. There is a "Permission to Evaluate" form that the schools have parents sign. Sometimes they take forever to make them available, but you can write, in your request, that this letter is to be accepted as your permission to evaluate, and that the timeline for the evaluation should run from the date of this letter - or words to that effect. Schools have 60 days within which to perform the evaluation. Then the evaluation can be reviewed by the parents and the team, and there is supposed to be a meeting to go over the report(s). If the child is found to be eligible for services, the meeting is also an IEP meeting, and the services are worked out, goals are established, specially designed instructions are incorporated, and based on what the child's needs are, placement decisions are made. Usually, a child is placed in a regular classroom with supports provided either in the classroom, or through "pull-outs."

If you disagree with the report, you can state that you disagree and request (in writing - nothing exists if it wasn't in writing) an Independent Educational Evaluation (IEE). The school district has to pay for an IEE or go to due process and prove that you have no legitimate claim for demanding one.

Since your children are being seen at MIND, if you have (or can get) reports that would be useful in getting appropriate supports for them in school, you should do so. School doesn't have to agree to everything you bring them, but they do have to consider them as part of whatever evaluation they undertake.

A great site for getting information about your legal rights, and how to proceed with various issues, is Wrightslaw. There's an overwhelming amount of information, but there is a good search engine, and there's also a topic listing that helps you find what you're looking for. They also have a free e-newsletter that you can subscribe to, if you're interested.

My son ONLY parallel plays, but the school psych claimed he had "a" friend because my son said so (he had a "friend" but didn't know his name, or anything of his friend's likes/dislikes/etc). He doesn't do imagination games, he is very by-the-book if you please My youngest daughter will sit and have her pet shop pets talk to each other... long-winded conversations about all things girly of course, while my boys make up plans for inventions or talk about things they've read, seen, or heard. Very fact, literal based.

Our school district told me last year in Kinder that even IF he had ASD, he doesn't get an IEP just for having ASD. I was like say what?

All my kids have sensory issues (as do I pretty badly, and ADHD to boot LOL) but my two ASD boys are opposite, my oldest son is under-responsive to sensory stuff except for pain in which he is over-responsive. My youngest son, will be severely hurt and not notice? Or doesn't understand what the feeling is??? He cut open his foot enough to get a bunch of stitches... yet there was a blood trail to where he was continuing to play.

He is doing "okay" in school because he is SO rule bound. If you tell him a rule, he finds it nearly impossible to go against it.

He has a -38 point discrepancy in numerical operations, yets gets 100% on all math tests??
He has a -41 point discrepancy in spelling, and a -28 in word reading. Yet the teacher just told me today that he is slowly learning to read, but not yet there.

He was evaluated last year. Full initial evaluation. He was also given a Speech assessment at the MIND, as well as a neuro-psych(which he is being re-referred to).

For me, it is the school's LACK of understanding WHAT issues he has. At the beginning of the year, we specifically told them (teacher, principle, school psych) that he does not feel pain like other children. He doesn't react to pain much at all, and will be seriously hurt and NOT tell anyone or seek help. On Friday he fell, and slammed his nose into a metal bar. He tried to tell the yard duty that he fell. But nothing was done. The teacher wasn't told, he wasn't sent for ice. Then his father had him for the weekend, and on Monday he was dropped off with a green and purple 3 times the size nose with black eyes... thankfully we found out at the ER it was not broken, but still the school was informed and they had a breakdown in communication.

No matter how many times I tell them he will NOT communicate his needs, they assume he will tell them when he is hungry/thirsty/needs the bathroom. He doesn't tell them if anyone has hurt his feelings, etc. He only requests from them tools in which to finish GOAL-oriented tasks given to him. They are not getting it, and it is frustrating me.

And his reading, lack of it, really concerns me.

mine parallel plays too, thats the extent of his playing with/near other kids. this year he is actually isolating himself from them more, so even less parallel play. he is in Headstart preschool, and they refer to the kids as "friends" instead of "boys and girls", so he calls his classmates his friends, even knows some of thier names, but he doesnt play WITH them or even want to.

the schools do their own evaluation, and doesnt seem to matter what the medical diagnosis is, if the educational one isnt ASD, then no ASD services. we hit this wall this past spring when the school psych refused to diagnose ASD. the school claimed that because of his speech language impairment he would still get services. i wont accuse them of outright lying, but they were wrong. he could still get ST/OT/PT based on his SLI, IF they thought he needed them all, but he couldnt get ASD specific services and accomodations without that educational diagnosis of ASD.

one change that was made to the IDEA laws in 2004 was an addition of the phrase "educational need", so now when the schools do evals its for "Determination of eligibility and educational need." that means if they find there is no educational need for services, they dont have to provide them, even if the child is eligible for services. they still have to do the evaluation if you request it, but it doesnt guarantee services.

Yikes! I'm glad to hear that there has been a referral for a new evaluation. When you go for the neuro-psych eval, ask whether they are able to include specific recommendations for the school to incorporate in working with your son. If they do that, it could be very helpful.

When you tell the school about your son's inability to communicate his needs, do you do it orally or in writing? If you haven't done it in writing yet, please do. The first thing you might want to do is send a letter to school documenting what occurred most recently. This is something you can do whether or not you have previously told them in writing about the communication issue. It would be something like: As you know, on Friday, November 5, Johnny fell on the playground, and slammed his nose into a metal rod. He informed [whomever] at the time that it occurred, but nothing was done. He was not sent to the nurse, no ice was applied - nothing. He happened to be staying with his father, who was unaware of the accident, for the weekend. By the time Johnny came home on Monday, his nose was green and purple, and was swollen to three times its usual size. Both of his eyes were black. Thankfully, when I took him to the emergency room, they were able to ascertain that his nose was not broken. [New Paragraph] While I would surmise that since Johnny was not screaming after his fall, the adults on duty believed he was not seriously hurt, it is precisely because of this unusual manner in which Johnny processes pain that I explained to [name the principal, the school psychologist, the teacher] the importance of monitoring Johnny for any incidents, and explained that he does not process pain like other individuals. In this case, it was a huge step for Johnny even to tell someone, and for that not to be followed up with proper care was not only poor first aid, it was also poor behavioral support for helping Johnny learn to report and seek help when he is hurt.

You might also want to ask for a meeting (if it's not too difficult for you to attend these meetings), that would include the principal, the teacher, the school nurse, and maybe whomever is in charge of the playground during recess (although I doubt you'll get that person - if there is one). During that meeting, you will want to go over the kinds of responses that are typical for your son when he is hurt, the kinds of responses the adult in charge needs to undertake to find out what happened/whether your son might actually be hurt, and when/how/how promptly you expect to be notified of incidents. If you can't have meetings easily, add it to the list of things to be included in the IEP, and in the meanwhile, add a paragraph to your letter stating that you expect to be notified, both by email and by phone, within an hour of any such events occurring to your son, and of the steps the school has taken to administer first aid.

The whole thing sounds very complex, and requires SDI's to make sure that he is being taught to identify and communicate his needs (it should be easier to talk about hunger/thirst than pain, since those are routine). I would expect that the neuropsych would have recommendations on these issues. The neuropsych may also uncover some explanation for what is going on with the reading. Some kids require certain types of reading programs in order to learn to read properly. If that is what is going on, the neuropsych should reveal this, and that will also help in formulating a solid IEP.

When school says that having ASD is not, in and of itself, a basis for having an IEP, they are, theoretically correct. The ASD has to impact on a student's access to education. The thing is, how can it not? A student may not have difficulty learning a particular subject, but since education is more than the academic subject, but includes working in groups, and includes inferential learning, students with ASD are going to be impacted. There are some students who may not be (noticeably educationally) impacted in kindergarten, but they will be by 4th grade. Schools tend not to be concerned about being proactive in preventing problems, even when they know they are coming. Parents want to prevent "crash and burn" scenarios. Therein lies some of the disagreements. Some of them are simply schools not doing their jobs.

I am in the process of putting together a data chart, using all the scores from all five of my kids so I can make the school really SEE what I am talking about... But they tend to blame our home situation for my children's issues rather than educational, and refuse services because of that.

I believe my ex-husband is undiagnosed Aspergers... and he has a lot of the negative skills in coping as a parents with AS... he has a single favorite, only interacts with the kids when they are doing or talking about something that interests him... etc. There are more but... the kids have been through a lot as well, since I left their father and we were divorced. It's been 3 1/2 years and he still thinks of me as his, and I left him for domestic violence. So the kids have issues beyond why may have been exposure or genetics.

But once I put the chart together I would love everyone's input... because I was told this year that it seems like pragmatic issues are an issue for the entire family, not just a few of the kids. I know I have pragmatic issues, but I am sure only treating a couple of the kids and not the whole of the family will not help the ones with severe delays. I used to think I was AS after reading the challenges, but the MIND institute said no, but that my ADHD symptoms do indeed mimic.

Well I lost whatever point I was going with so I'll just go ahead and hit post now. LOL Before I continue to ramble on with unnecessary information.

This reminds me of when the school stated my daughter had reciprocal social interactions because she completed a "high five" with the examiner. What six year old AS child can't do a "high five"?? I can only laugh now, at the time I was very confused!

iamSuperMom I wanted to point you toward a very good board where the posters there are very adept at interpreting test scores:

http://millermom.proboards.com/index.cg ... =Education

If you post there they will tell you EXACTLY what to say to the school/district to highlight the issues. (I hope it's ok to post the link)

This was a HUGE problem for my daughter at public school and continues to be. She will not communicate her needs and is selectively mute at school, and is especially so when anxious, which they interpret as "everything's ok cause she's not melting down".

My daughter also does not read and we are really struggling with it. She is in 2nd grade and is superior in math. I think it's just the way her brain is wired and am not overly concerned. My AS brother didn't read until 3rd grade. And when he did start reading he went from not reading to being able to read a newspaper very, very quickly.

I will definitely check it out. They are doing a full reevaluation on three of my five kids, my middle son however... they are trying to exit him from IEP because he made his articulation goals, but was diagnosed with severe anxiety disorder and last year they told us he has issues with writing and that they would make accommodations and haven't thus far... its a crappy crappy district! LOL His therapist says he is Autistic-Like, that he has a lot in common with AS, but not enough for a full diagnosis.

Oh I wanted to say that with my youngest in Kinder last year during the evaluation, they wrote down that he was observed to remain apart from the other students, and was seen talking to himself, and stacking toys... yet... he was very social with NO atypical behaviors! *sigh*

Actually, we were told that it is an automatic qualifier, and we are in CA. It is on "the list," so to speak. Anything not on "the list" and we would have to show a negative impact on the education; because it was ASD, we did not have to. At least, that is how our district interpreted things.

High PIQ verses VIQ is often displayed in autism spectrum disorder and the opposite is often displayed in Asperger's Syndrome.... but keep in mind there isn't much of a difference between the labels and everyone is different.